Karin Del Maestro | When Doctors Say, "We Don't Know" Podcast | Episode 207

Welcome to the show. My name is Eva Vennari, founder of the Elevate Institute, and I'll be your host for today's podcast. When Doctors Say We Don't Know is an inclusive conversation, and so many are craving to share their stories and experiences. Today's guest is no exception. Today's honored guest is Karen Del Mastro. Most days you'll find Karen in her yoga pants. That's a good place to be, working from home with breast cancer survivors around the world to help them navigate life after treatment. Ends, right? So treatment comes to an end, and while also reducing their risk of recurrence. Not such a big deal. And as a health coach, breast cancer survivors, and BRCA2 carrier, Karen focuses on how simply rethinking our daily habits guides us to becoming an active cancer thriver rather than simply a passive survivor, which I'm all about. Karen, thank you for coming to the show.

Thank you so much for having me, Eva. Such a pleasure to be here.

Yes, I love that you raised your hand to be a part of this because I never— I didn't really know what to expect from everybody who wanted to be a part of this, and I'm getting all kinds of these, these beautiful shares. So it's like if we can hear our own story inside of another's because they're open and willing to be transparent about it, then maybe we can, you know, save someone else's life. And I think that's what this is all about today because breast implants are so prolific. They're everywhere, aren't they?

They're everywhere. They're everywhere. And, you know, I think it's really starting to become mainstream as to really what are the effects of putting something into our body. But obviously I focus, you know, it's relevant to anybody with implants, but I focus especially on breast cancer survivors who've had mastectomy or double mastectomy like myself and who go the route of breast reconstruction.

Well, and I'm wanting to connect the dots here between, you know, the checking, checking the breast for lumps, getting the confirmation, oh, we found a lump, and oh, there is the cancer, and having it go through that whole process. But where in this whole story did you experience the answer, we don't know?

Um, I, you know what, to be honest, I experienced it in a couple of different places, and one was prior to my breast cancer diagnosis. this, which was I knew that something was off in my body. Something wasn't feeling right. And as, you know, as a health coach, I have had the fortune of becoming very in tune with my body over the years. And I knew that something just wasn't feeling right. And I had previously had Zika virus. I lived in the Caribbean. My husband and I lived in the Caribbean for a couple of years. And a week after our wedding, I actually got Zika virus and I got very, very sick. Oh, my goodness. And so I was seeing autoimmune specialists. I was seeing all of these different specialists saying, what's wrong? What's wrong? And we were running so many different tests and everything was coming back within normal range, which as you and I know, normal range isn't necessarily my normal or your normal, but it was showing up in normal range.

Right.

Which is often all we've got to go on as a starting point anyway. So I just kept looking. And that's, you know, one of the things that I think is so important for your audience to hear. If you are feeling, if your gut is saying, or if you've got that niggly voice in your head, something's just not right. Our body does not lie to us. It really does communicate that something's off or something's wrong. And so I kept looking. I just kept looking. And it was actually my routine mammogram where we found my lump. And, you know, that was the beginning of my breast cancer journey. And so that was the first time that I kept hearing from doctors, we don't know, we don't know. And, you know, they were just sending me to another specialist and another specialist. And what I was feeling went away completely after my double mastectomy. So it really was the cancer in my body was sending all of these other signals to my mind and to everything else, just saying something's not right.

So, so there, there's that moment in time when you're deciphering, yes, it's cancer. What's the other time? Because you said it happened a couple of times.

Yeah, yeah. The other big one, and this is the big one, and I think this is where we're going to spend a little bit of time talking today, um, because you touched on breast implants, um, and this is something That becomes really, really tricky for many breast cancer survivors. My route was also finding out that I have carried the breast cancer gene. I had a double mastectomy. I also then had 3 reconstructive surgeries. I had another surgery to remove— complete hysterectomy and oophorectomy. So there were a lot of changes in my body, as you can imagine, going through 5 major surgeries within 1 year.

Wow.

Yeah, so it was a lot. So at that point, you know, what we often don't understand is that the next stage of recovery actually starts after active treatment ends. So here I am thinking that I'm in this next stage of recovery. And I'm also then on continuing medication because my cancer was hormone receptive. And so we had to do something to stop my body from producing estrogen. And so taking something called an aromatase inhibitor to stop my body from producing estrogen. Again, another thing where it's like, okay, something major has changed. I think anytime we're taking a medication or a supplement or anything, our body's always going to respond in some way or another. So you've got that thought and the doctors are saying to me, Karen, what you're What does the hormone receptive part mean?

What is that all about?

Okay, so we all have cancer cells in our body, right? We're born with them. They're all there. There are certain things that can trigger growth of these cells. And that's the, that's the big thing, you know, that we all need to kind of be aware of. One of the major things that you'll notice in many, many, many breast cancer patients Is that they undergo massive amounts of stress prior to diagnosis.

Okay.

So, you know that when, when we're stressed, we've got our stress hormone cortisol, um, starts flying around our body and we go into this massive fight or flight syndrome. So our body is now in massive fight or flight. And as our cortisol is being thrown off, as are all of the other hormones in our body. Our body naturally likes to balance its hormones. That's where it would like to be. And so it fights to do that. But the problem becomes that when we've got more cortisol, our estrogen also increases. And so if your cancer cells happen to love estrogen, they're gobbling up that estrogen and they're growing. So when you have a hormone-receptive cancer cell, that's what happens.

Well, I'm thinking of a number of ways that that can be triggered. I mean, we know that emotions especially, they can, right, they can trigger these, the chemical reaction in the body. So there's, there must, you must have some insight on—

Oh yeah. I mean, there's, there's so many things and I like to look, not just like, obviously as a, as a health coach, I'm looking at food. I'm looking at what's causing inflammation and what's throwing off our hormones and things like that. But I also really like to dive into our personalities and our— because there's— there are actually common characteristics amongst many breast cancer survivors from our personality, like care. We're the caregivers, we care for everybody else, we put ourselves at the bottom of that list.

Right.

We tend to be very conscientious and hardworking and Focus— again, focusing outwards, right? Not on ourselves. Like, there's a— there's actually like a whole bunch of characteristics that are very common and are all about who we are as human beings. And so my whole thing is that I, I don't want to change who anybody is, but I do think it's super important that we take care of ourselves first so that we can take care of everybody else, so that we can manage that stress, so that we can manage those anxieties, so that we're not becoming resentful of being pulled in a million different directions every day.

Did you find that you were in that place before?

Totally.

Yeah. Seemed like a logical conclusion, but—

I have to say, was I in that place? Well, I mean, what happened prior to my diagnosis, I had a month of major, major trauma. My mom passed away, my brother almost died, and my husband was in a motorcycle accident.

Oh my God.

All within a 1-month period. That was literally a year before my diagnosis.

Wow. And do you think that the— well, how, how long does it normally take for the body to start creating the, um, the cancer cell I guess would be the cysts themselves. Does it take about a year or would it be longer than that?

Or do you— it depends on the kind of cancer. It depends on the stress level. It depends on whether you're eating inflammatory foods. It depends if, you know, the whole other thing is too, even when we're stressed, our coping mechanisms are often, you know, maybe having 1 or 2 extra glasses of wine a night, right? You know, maybe we're eating chocolate and ice cream every day, or if it's me, then sour cream and onion potato chips.

Those are yummy.

Like, we've all got our thing and our vice. So that's the thing, it's not just the stress, it's the coping mechanism that the stress triggers also. So it's, it really is just compounded, and it's different for everybody depending on how you cope. I now cope, um, you know, I've learned different coping mechanisms over the years, and my coping mechanisms now look like an awful lot of self-care. You know, it's Epsom salt baths, and it's meditation, and it's things that are going to be beneficial to my body versus, you know, encouraging those cancer cells to grow.

Got it. So then In this place where you're realizing, uh-oh, things aren't feeling right again, I don't feel right in my body again, what was the red flag that went up that said, finally said, this has to do with these breast implants that I have?

Well, I started to, um, let me— is it okay if I give you like a list of the things that I started to feel?

Yeah, I think that's so important. As you know, I'm, I'm curious about it because This is like I said, everybody's— everybody— a lot of people have breast implants and they need to know what to look for.

Yes. Um, so these are some of the things that I was feeling. And by the way, there are over 100 symptoms of breast implant illness.

Wow.

The problem becomes that there is no test. So, and this is why doctors really aren't, um— they're embracing it more than they used to, and we're going to start to see some big changes as they're about to put A black box warning on breast implants now. Um, the FDA is— that has just been passed. Um, but these were some of the things that I started to feel. Chronic fatigue, just had difficulty getting out of bed in the morning. I was taking 2 or 3 naps a day, which again, is it the medication? Is it my recovery from breast cancer? I didn't know. Um, I had ringing in my ears. Swollen lymph nodes. I had anxiety from the second I woke up in the morning till I went to bed at night. Um, brain fog, which again we associate— you know, you've heard of chemo brain.

Mm-hmm.

Um, I did not have chemotherapy. I was very, very fortunate that was not part of my treatment plan. Um, but I could not think. There were times I couldn't even get a Sentence out without like speaking gobbledygook. It was blah blah blah. Right? If you ask my husband, he's like looking at me like concerned that maybe I was having a stroke or something.

Oh my goodness!

It was bad.

Yeah.

Heart palpitations constantly. I had muscle weakness, vision issues. I had terrible inflammation in my eyes. I was on steroid drops in my eyes. Depression and terrible joint pain in my shoulders and my hips. Especially for me, I also have problems with my Achilles. And then, you know, definitely full-blown adrenal fatigue. And also, and I have to say, really low sex drive. So these were all things that I was feeling that can absolutely be attributed to my journey of 5 surgeries in a year, the stress and anxiety just associated with discovering that you've got breast cancer, and also the medication I was taking. So it was really, it was confusing. It was confusing. And I would go to see doctors and they're like, well, kind of, we don't know. We don't know. This could be the medication. We don't know what this is. And so I started to research, and, um, there are a couple of amazing resources in some great Facebook groups, um, that we will absolutely share with your listeners in case anybody is dealing with this.

Great idea.

Yes. Yeah. Um, and I just started to research, and I just started to listen, and I just started to watch conversations that were going on around this topic. And then I started to have some burning around my implants. And I just said, you know what, I just don't feel like— again, this was my gut talking to me. And it was, I just don't think that these are working in my body. I live a very clean, non-toxic lifestyle, both with food and cleaning products around the house, beauty products, all of that stuff. And so I'm very aware of what toxicity can do to our bodies. And, you know, that might beg the question, well, why did you even go and have implants, Karen, if that's the case? And to be honest with you, when I discovered that I had breast cancer and that I needed to have this and chose to have this double mastectomy because of the— more because of the BRCA gene, honestly. Um, I wasn't ready to go flat. It all happens very quickly. And it's, it's kind of, it's a shock, you know, when you discover that you're going through this. And so I made a decision for myself. And I don't regret making the decision because I've learned so much along the way. Um, but I made the right decision for myself at the time. And so I came to the point after feeling all of these things, after researching What could it be? And just really connecting the dots and going to the doctor and saying, I, you know, this is what I'm considering. And, you know, first of all, they said there's no guarantees, Karen, if you remove these implants, there's no guarantees. This may well be the medication. So it was a little bit of a leap of faith. But over the years, I have learned to trust my body and trust my gut and really, really listen. And, you know, it was obviously a conversation that my husband and I had for months. To be honest, it was not a quick decision.

Yeah, I can't imagine this would be.

No, you know, and it's like, you want to just talk through everything, you know, you want to, and I'm going to be very open, but it's You know, you want to talk through, is this going to affect our sex life and our intimacy and things like that? Um, and, you know, I'm just incredibly fortunate that my husband Mike, his response was, Karen, I want you here. I want you here. I want you healthy.

Right.

And that's the thing that's important to me. So You know, and like I said, I'm lucky for that, and I recognize that, and I'm grateful for that. And I know that not everybody has that kind of support. But, you know, and so there began the journey to removing the implants and going flat. And what I want to really share, and I'm so excited to share, is that I'm flat. I have no boobs whatsoever, and I feel so much sexier than I did before. Um, my chronic fatigue is gone. I don't desire that during the day anymore.

Mm-hmm.

And as we are recording this, just so the listeners know, we are just 11 weeks out from my surgery, from my explant and removing my implants. So 11 weeks out, my chronic fatigue is gone.

Wow.

The lymph nodes gone. Anxiety gone. Gone.

That's amazing.

Brain fog gone. Heart palpitations gone. Sex drive is back.

Good news.

Good news. Joint pain gone. Muscle weakness gone, vision issues gone, depression gone. So I would say 95% of what I was feeling and what doctors were considering was more than likely the medication I was taking. It's all gone.

So you have me really curious now. When, when they went in 11 weeks ago. 11 weeks, right? You just say weeks?

Yeah.

Wow. I'm still kind of over that. Okay. So, all right. Yeah. 11 weeks ago when they went, this is a fresh memory. So what did they find in with the breast implants? Was there something wrong? Was there something going on? Was it really leaking? What was the deal?

No, no, they were intact. And what is super, super important for anybody that's considering going through this is there is a certain type of surgery that needs to be done. Because what so often happens with implants— mine were not leaking, they were not ruptured in any way, shape, or form. This was purely my body's reaction to— even if you do a saline implant, the outside is silicone. Silicone is made up of a ton of different chemicals. This was my body's reaction to the silicone.

Oh.

And the body actually builds A capsule around the implant. So when you are getting— should you choose to go through, you know, an explant surgery to remove the implant, you need to ensure that you are getting what's called either an en bloc or a total capsulectomy, where they are removing every ounce of the capsule. I have heard stories Where— and actually I was speaking to a breast cancer survivor the other day where her body kept testing for mold and they kept testing her house.

Oh my goodness.

And it wasn't the house, it was her implants. Um, so I've heard of mold, I've heard of MRSA, I've heard of staph, all of these different things because of the implants. All, they are all in those capsules that the body is creating to kind of protect itself against these foreign bodies.

Well, now you're making me curious to wonder, could these same problems occur with any type of implant?

Yes, yes, and that is— that has been proven. So if you are, you know, perhaps having a joint replaced, for instance, that can also happen. Um, again, it's not really spoken about.

No, that's why we're here. Exactly.

And thank you so much for doing what you're doing and opening the door for these conversations that hopefully just helps one person out there today, hopefully more. But, you know, um, yeah, absolutely, they can absolutely happen with any kind of implant, any foreign body going into our bodies. There is the possibility of our body having a negative reaction to it.

Yeah, well, this reminds me also of like kidney and liver transplant, heart transplants. The body can reject even human tissue, let alone, um, the chemical tissues you're talking about.

Exactly.

Yeah, amazing.

And our bodies are very sensitive to these things. So, um, but You know, the good news is, is that we do have the ability to do something about it. And that becomes— it's a very, very personal choice. There is no right, there is no wrong. But I think, you know, 2 of the things that I see, and I know that you see, so prevalent in today's society are anxiety and depression.

Yes.

And we don't even think that we could be experiencing those things, like, to the level that I was. I mean, I was talking to a psychologist and they were ready to put me on some heavy-duty medications. And I said, please, let's just wait until after the surgery. I spoke to the doctor after the surgery and he looked at me and he said, Karen, you're a different person. I said, I've got my life back. I really— I got my life back by taking out those implants. My husband is like, I've got my wife back. This is amazing. We're back to laughing and enjoying each other and, um, just being goofy with each other, which we always are. But one of the biggest things that I miss Was being able to because when you have a double mastectomy, you lose all sensation. I couldn't feel him when I was hugging him. Oh, and now I can feel him again.

Oh, I see what you mean. I thought afterwards you couldn't.

Yes. Yeah. You know when you hug somebody and you can normally feel them, and you can't if you've had a double mastectomy. So that's one of the massive benefits. I mean, just so many things. Like when I say I got my life back. I truly got my life back. And to have gone through battling cancer, and I think about, you know, if I hadn't put those dots together and if I hadn't connected that and advocated for what I felt was necessary for me, it scares me to think of the path that I'd have gone down.

Well, and I thank you so much for sharing that because a lot of people have anxiety just over having that conversation with their doctor to broach the subject of, hey, wait a minute, I want to try something different other than what you're recommending. Can we have that conversation? And I think, you know, bravo to you for being your own advocate. There's just so many I know don't. They come home and, I wish I had said this, or I wish I'd said that. Do you have any advice around that for them?

Yeah, I mean, I think one of the biggest things That I did before each of my doctor's appointments is I wrote a list. I mean, I think that really getting in tune with yourself and what are your fears, what are you concerned about, what are you hearing or reading about that's maybe triggering questions in your brain. So if you're going into a doctor's appointment like that, try and have all of your questions, you know, there ready to go. If a doctor, I believe, is saying something to you kind of like with with me before my breast cancer was diagnosed, if I wasn't getting answers, if you're not hearing what you think, like really think, not just guessing, but we have to advocate for ourselves. So if you think that there's maybe another path that you'd like to explore, if you think maybe is there another option, don't settle until you have the information that you feel comfortable with. This is your body. Your rights, your health. And as far as I'm aware, we only get one of those as we go around in this— on this earth. Um, you know, whatever, whatever we believe, but we only get to do it in this body one time. And I believe that we have the right to stand up for our body and ask for what we actually want and deserve. I agree.

And that's such a beautiful— not, not just a sentiment, but a life value. So, and you mentioned earlier that you had a couple of resources. So would you, would you mind sharing those, the Facebook groups, and then also anything else that you have that you want to share with the audience today?

Absolutely. Well, first of all, I want to share that, you know, I do work with breast cancer survivors, and I do have a Facebook group called Healthy Living After Breast Cancer. And so anybody that's a breast cancer survivor, whether you're having issues with implants or not, but you're, you're looking to thrive and, and Not just struggle, and, you know, maybe you're thinking that I just want to feel well again, hop on over to the Facebook group. It's Healthy Living After Breast Cancer. It's a wonderful community. With regards to breast implant illness, there are a couple. There's a website called notputtingonashirt.org, and we'll make sure that Eva has the links for these. And also there's a Facebook group called Breast Implant Healing Breast Implant Illness, sorry, by Nicole. So it's Healing Breast Implant Illness by Nicole. Those are just some really good informative resources that were super helpful to me as I was coming to my decision. But also, please, you know, Eva has my information. I love to connect with people. So if you have questions for me or about this, please just feel free to reach out. You've got my website there and also my email. I am happy to either help you or direct you to the right people that can help you if you're on this path and wondering maybe what your next step is.

These are such generous resources, so thank you for that and being available. I will have all of that information on your show notes page. The Facebook group, the Healthy Living After Breast Cancer, the Putting On a Shirt website— Not Putting On a Shirt, rather.

Not Putting On a Shirt.

Not, yes. Hey, now you've got me curious again. Uh, there's places where men can go shirtless but women can't. Does that change the story now that you don't have breasts?

Um, apparently you can. I have yet to do it. I, I'm not brave enough for that yet, but I see many women on the beach, pictures of them on the beach just with a bikini bottom on now.

Wow. Okay. That just popped into my head. I don't know why I thought I'm almost jealous. I'm like, no bikini top to worry about. That's awesome. Well, thank you for all of that. And I always ask the final question of every episode because we are coming to the end. What do you feel is the most important thing to remember when searching for answers?

Hmm. I do believe it's listening to your body and not just Taking what somebody else thinks is the right move for you to do. Advocate for yourself, advocate for your health, and find, find your support system around that. I think what I have found is that there's always support systems out there. You may not know where they are yet, and that's okay. But there's always people out there that can support you on this journey and And get you, like actually understand how you're thinking. And, um, but I think don't settle, don't settle, and don't, don't give up. If your body is saying to you something's off, more likely than not something is off.

Yeah, our internal guidance system is so on the dot and we don't know it all the time. So yeah, beautiful. Well, thank you again for being a guest on the podcast.

Oh, good. Thanks so much for having me, Eva. A pleasure as always. I always enjoy talking to you.

Thank you. Yes, you as well. And, um, I'm, I'm interested at some point in the future, we may circle back around to you and see how you're feeling after a year, not just 11 weeks, but maybe 11 months.

Ooh, gonna be flying.

Yeah, we'll check back in.

Sounds good.

All right, we'll make a plan for it. So, well, all right, I'm signing off now. Thank you again, Karen, for being a guest on When Doctors Say We Don't Know, and thank you for listening in. This has been an engaging conversation, and I'm hopeful that those of you listening will hear that message of hope so you too can turn your experience of pain into triumph. If you're driving and simply can't click on the links right now to the show notes, remember you can always hop onto theelevateinstitute.com, follow the podcast links for today's show. There's more to talk about. Tune in next week. For the next episode of When Doctors Say We Don't Know. This is Eva Vennari reminding you to question everything.